The Yellow Wallpaper

I’m doing better since my last post, which is interesting to me, since nothing external has changed. Except, maybe, my hormones–which I know are internal but I think fueled my anxiety last weekend. So the medical researchers out there who are looking for a way to use that extra NIH grant money might consider studying the effects of menopause on middle-aged caregivers. There would be no shortage of participants, I imagine.

While on the subject of caregiving, I want to link to this post by Gail at Mom & Me Journals dot net. She originally wrote it almost a year ago, but has revised it recently. I’ve been thinking a lot lately about the psychology behind the advice I often hear given to caregivers–basically, if we don’t ask for help we shouldn’t expect to get it. Can you imagine giving that advice to, say, someone with serious depression or cerebral palsy?

There are few absolutes beyond death and taxes, but one of them is that all caregivers want help. ALL OF US. Many of us are so immersed in the particular world of our care recipient that we are just too tired to write memos detailing the particular areas of need. But some of us do. Some of us turn to blogs because the experience is so solitary and isolating, and we no longer know who to turn to. This will come as a surprise to the folks that Gail refers to in her post, but it’s true.

I can speak best for adult “children” of infirm parents, those of us who might also be caring for our own children, or working outside the home. Most of us have had the experience of being sucked into the institutional care maw, whose processes serve mostly to perpetuate itself. “Economy of scale” is the prevailing principle, or, “You’re going to get this service whether you need it or not because it’s easiest for us.” And you either take the package, or nothing at all.

An example is my mother’s recent hospital stay for a pulmonary embolism. I will reluctantly admit that I appreciated the hospital’s obvious brush with TQM (Total Quality Management) had made a real difference in the way we all were treated. The institution was making an effort to reach out to its customers. But behind this customer service model lurked the same harried generalizations that underlie institutional “efficiency.”

It amazes me that hospital professionals still seem surprised when an elderly patient exhibits delerium. I would imagine that most of the patients at any given time in a hospital are over the age of 60–shouldn’t we be paying more attention to the psychological effects of hospitalization on these older patients? A number of years ago I saw my father go from lucid to delerious during the six or so hours we spent waiting in the emergency room before he was admitted for his spinal stenosis. Not once did a doctor or nurse mention that this is a relatively common occurrance for the elderly patient. I had to research it on my own. This occurred about eight years ago, and the only improvement I can see is in the nature of the restraints that are used. Instead of being tied down, like my father was, my mother was discreetly alarmed in the nursing home.

But my point here is that when my mother exhibited delirium during her recent hospital stay, the social work staff were pressuring me to make long-term care plans based on that transient state. My sister and I might say to them, “No, she isn’t this agitated and delerious at home,” and I sensed they thought we were refusing to face the truth. In addition, my mother’s embolism weakened her–as expected–but the same staff were counseling us to ditch the plans for assisted living in favor of a nursing home, based on my mother’s pre-rehab state. “She doesn’t look like she can walk to me,” one of the social workers snapped when I resisted her.

Maybe, since Alzheimer’s Disease alone would not qualify her for Medicare benefits (ARE ANY MEMBERS OF THE SENATE SPECIAL COMMITTEE ON AGING LISTENING TO THIS??) the staff were trying to find some disability that would keep her in rehab as long as possible. But isn’t that just another sign of something wrong here?

So back to my original gripe about having, on top of everything, to ask for help or forever hold our peace: there’s help and there’s help. Institutional help usually means orchestrating a spectrum of unaffiliated services or dealing with a monolithic institution (see also Mike’s experiences at Fading from Memory, as well as Bert’s at Had a Dad). We have to figure out what’s private pay and what’s paid for by insurance, which usually induces apoplexy at the disconnect between Washington and the rest of America.

And why are our Congress members NOT looking at the fact that a nursing home costs upwards of $6000 a month: How many people of retirement age earn that much from their social security and pension? How many of them can afford this, or assisted living, without impoverishing themselves? And what further toll does this take on the caregiver, who is by this time exhausted but still wants the best care for her charge? The caregiver must now enter the world of the housing market, on top of everything else, just to “spend down.” Instead of coming up with an institutional solution for this disconnect, the burden is again placed on the person responsible–the caregiver. As long as we rely on this tortured misuse of Medicaid we are not facing the primary problem of our responsibility to our most vulnerable citizens AND we are keeping a dirty little secret that is anything but, and which is a further insult to the unpaid caregivers whose collective role we don’t really want to acknowledge.

I’m going to continue this post tomorrow.

Today I miss having my own life. I miss it badly. I must be running on reserve tank today but I’m thoroughly tired of answering my mother’s questions about her hair. Her hair is in dire need of a shampoo, a cut, and maybe a perm–that was always her regimen in the past. She has refused to go to the hairdresser for months now, and yet I think she believes that I can magically restore it to its old look simply by putting it up in curlers. While in the hospital, one of the nurses French-braided it, which neatened things up. I’ve been pulling it back into a ponytail since then. She has asked me at least three times whether she should take the rubber band out of her hair today. She “doesn’t think it’s working out.”

Aye-yi-yi, as they say. It needs a good shampoo–a real shampoo, with water and everything–but she doesn’t want to. And I’m just too tired to argue with her.

Oh, yes, and her toenails need to be trimmed–which means either a trip to the podiatrist or a soak in the footbath before I trim them. I’ve already spent the morning paying bills, cleaning the bathroom, doing the laundry and the vacuuming, washing out the anti-embolism stockings (which cost about $25 a pair, so we don’t have as many as we should have…). My sister seems to have unilaterally decided that she will stay overnight only every other night, and this arrangement does not seem to include anything more than sleeping here and watching TV. No housework, no personal grooming assistance. No medicine administration, no outings for Mom. No leaf-raking, no grocery shopping. No nothing, unless it’s spelled out for her, and I’m getting tired of all this spelling.

So I merely need to vent. And in the interest of keeping an honest blog, I’ve decided to vent here. No need to comment on this–it’s just a little spume.